This is absolutely wonderful, and absolutely not for the squeamish.
Defective Heart Girl Problems is a blog where physicist Summer Ash has blogged her experience with finding out that she has a defective heart valve and getting treatment to deal with that defect. The image above shows her scar from her recent surgery.
Ash went through surgery to repair her heart on July 18th. Here's how she explains the problem:
I recently discovered that I was born with a congenital heart defect known as bicuspid aortic valve disease (BAVD). It’s not a disease, per se, so much as a defect. Most people (roughly 99% of them) are born with a tricuspid aortic valve. I am the lucky 1% born with a bicuspid valve. (I am the 1%!)
As a bonus, being born with this genetic mutation also means the lower part of my aorta, the part that connects to the aortic valve and helps channel the flow of oxygenated blood into the arteries, has less fibrillin-1 – a protein that helps to maintain the structural integrity of the aortic wall. This means that my aorta is prone to “stretching out” and even the normal stress of blood flow coming out of the heart and being channelled to the rest of the body is enough to cause it to start ballooning outward.
The nominal course of BAVD usually entails the aortic valve calcifying and stiffening later in life (60s – 70s), ending in valve replacement surgery. Some people will also need the root of their aortas replaced at this time, some may not. My problem is that my aorta is jumping the gun; it’s already stretched out to the point where it’s considered an aortic aneurysm. I like to imagine it as a hipster, dilating before it’s cool to do so.
On July 29, she posted the full story of her surgery, including photos of her visible heart and really clear, well-written explanations that describe what her surgeon's did while they were rooting around in her chest cavity. It's graphic. And it's not for everybody. But it's also extremely powerful storytelling about both medical science, and the experience of having something go wrong with your body that you can't control. Highly recommended.
Read Summer Ash's description of her surgery
(Via Jennifer Ouellette)
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